Compassion for all hepatitis C victims

Transcription

1 Compassion for all hepatitis C victims Hepatitis C Compassion Umbrella of Canada September 2004

2 Compassion for all hepatitis C victims Summary There is a forgotten group of victims of tainted blood in Canada: the thousands of persons across the country who were infected with the hepatitis C virus through blood transfusions but who have been ruled ineligible for inclusion in the federal/provincial/territorial compensation program. The federal government has ruled that it is responsible for only those persons who received tainted blood between January 1, 1986 and July 1, According to then Health Minister Alan Rock, inclusion of all hepatitis C victims of tainted blood would bankrupt medicare. Current evidence shows that the estimated numbers in both the 86/90 group of hepatitis C victims and the pre-86/post-90 group were hugely overestimated. More than four years after the $1.2 billion fund was set up to provide compensation for the 86/90 group, over $1 billion remains. There is more than enough money in the program to include the hepatitis C victims who received the virus from tainted blood transfusions before 1986 and after Those who contracted the virus prior to 1986 are among the longest-suffering and many are among the sickest of the hepatitis C victims. The federal government of Canada should immediately expand access to the existing 86/90 fund to include hepatitis C victims now in the pre-86/post-90 excluded group. This compassionate action would provide relatively quick access to desperately needed financial assistance for thousands of victims across Canada.

3 Compassion for all hepatitis C victims Thousands of people across Canada were infected with the hepatitis C virus through transfusions of tainted blood provided by the Canadian Red Cross. One group of these victims has been deliberately excluded from the federal government compensation program. Pre-86/post-90 hepatitis C victims excluded from compensation program In March 1998, the federal/provincial/territorial governments announced a $1.2 billion compensation package for Canadians who had been infected with hepatitis C through blood transfusions. However, this package would be extended only to those hepatitis victims who received tainted blood between January 1, 1986 and July 1, Those persons who were infected with hepatitis C through tainted blood before January 1, 1986 and after July 1, 1990 were not eligible to access the fund. The federal government s rationale for the inclusion dates for the 86/90 group was that during this period screening tests to detect the hepatitis C virus were available but not used in Canada. In the view of the federal government, it is not responsible for compensating anyone who was infected by the hepatitis C virus through a blood transfusion received before January 1, 1986 or after July 1, The program was set up with $1.2 billion to be distributed to eligible victims across Canada. The federal government estimated that there would be more than 20,000 persons in the 86/90 group who would be eligible for compensation and if the program was extended to an estimated additional 22,000 pre-86/post-90 hepatitis C victims the expense would bankrupt medicare. In fact, there are only about 5,000 hepatitis C infected victims in the 86/90 group. There are approximately 6,000 victims in the pre-86/post-90 group. The $1.2 billion fund is adequate for all hepatitis C victims of tainted blood. Hepatitis C sufferers are not the only victim of Canada s tainted blood supply, but they are the only ones subjected to an arbitrary inclusion period. Persons who contracted the AIDS virus from tainted blood are compensated by the federal government regardless of when they were infected. In his 1997 report, issued after a four-year public inquiry into Canada s blood system, Judge Horace Krever recommended the establishment of a no-fault compensation program for persons who became infected with disease as a result of blood transfusion. Justice Krever wrote: Until now, our treatment of the blood-injured has been unequal. After years of suffering devastating financial losses, many persons infected with HIV from blood or blood products, or their surviving family members, finally did receive financial assistance.

4 Other Canadians who have suffered injuries from blood therapy have not received any compensation. Yet the needs of those who have been harmed are the same, regardless of their cause, and whether or not fault can be proved. Compensating some needy sufferers and not others cannot, in my opinion, be justified. The provinces and territories of Canada should devise statutory no-fault schemes that compensate all blood-injured persons promptly and adequately, so they do not suffer impoverishment or illness without treatment. The only recourse for the pre-86/post-90 excluded group of hepatitis C victims has been to pursue claims in the courts. Class action suits have been underway for a number of years in British Columbia, Ontario and Quebec. Lack of compassion for the pre-86/post-90 excluded group Canadian Red Cross settlement The Canadian Red Cross began testing for the presence of the hepatitis C virus (HCV) in A surrogate test was in use in the United States in 1981 and was under active consideration in Canada. The available test would have dramatically slowed the spread of the virus. In July 1998 the Red Cross filed for bankruptcy protection. Two years of negotiations resulted in a partial settlement of class action law suits to compensate hepatitis C victims across Canada who had received tainted blood before 1986 and after A trust fund of $63 million was to be distributed to victims across Canada in three installments: June 2001, Fall 2004 and Fall The amount that will be received by an individual victim will depend on the number of applicants for compensation. Estimates are approximately $12,000 per person. In its first three years, 4,804 pre-86/post-90 victims have been approved for compensation from the Red Cross settlement. Provincial funds Four provinces have established compensation programs for hepatitis C victims infected before January 1, 1986 or after July 1, 1990: British Columbia approximately $7,000 per person; Manitoba, $10,000 per person; Ontario and Quebec approximately $25,000 per person. Care not Cash funds Historically, the federal Liberal government has been adamantly opposed to including persons infected with hepatitis C through blood transfusions in the compensation program unless they received the tainted blood within its arbitrary window of January 1986 to July 1, In September 1998, then Health Minister Alan Rock sought to deflect pressure from the public, media, opposition MPs and even a number of Liberal MPs by committing $300 million to a Care not Cash program for the pre-86/post-90 excluded group of victims. The funds were to be transferred to the provinces and distributed to ensure that pre-86/post-90 victims did not have to pay out-of-pocket expenses for treatment.

5 Nearly six years later, there is almost no evidence of programs set up to distribute this money to hepatitis C victims. There is, however, ample evidence of hepatitis C victims who are unable to afford needed medication, who have been forced to declare bankruptcy, who have lost their jobs and homes. They have seen no sign of the $300 million. Living with hepatitis C Hepatitis C is a potentially fatal liver disease caused by a blood-borne virus. There is presently no vaccine against hepatitis C nor is there a cure for the disease. Hepatitis C is the most serious form of viral hepatitis which causes inflammation of the liver. Approximately 80 per cent of persons with hepatitis C will develop chronic hepatitis. Persons infected with the HCV have a 25 per cent risk of developing cirrhosis of the liver. Approximately five out of every 100 persons who are long-term carriers of the virus may develop liver cancer. It may take 10 years to develop symptoms of hepatitis C, 20 years to develop cirrhosis, and 30 years to develop cancer of the liver. Viral hepatitis is the most common reason for liver transplantation in Canada. Symptoms of chronic hepatitis C, which may not appear for years after the initial infection, can include fatigue, jaundice, nausea, hair loss, unresponsiveness, forgetfulness, trouble concentrating or sleeping, weight loss and water retention. Across Canada, persons who contracted the hepatitis C virus through a transfusion before the screening process was put in place in 1986 are living in pain and fear of a severely reduced life expectancy. Many have been forced to give up their jobs and homes. Many are unable to afford needed medication and treatment. Many have died while waiting for their government to include them with the other victims of tainted blood. These hepatitis C victims are among those who have suffered the longest and many are among the sickest and most in need. The federal government has refused to include these hepatitis C victims in its $1.2 billion 86/90 compensation program. Programs have not been put in place to provide these hepatitis C victims with assistance from the $300 million Care not Cash fund. What can be done? When the federal government and provincial governments announced their compensation program for the 86/90 group in 1998, the number of eligible applicants was hugely overestimated. It was thought that there would be at least 20,000 applicants who had contracted the hepatitis C virus through tainted blood transfusions between January 1, 1986 and July 1, Then Health Minister Alan Rock warned that inclusion of what was estimated to be another 22,000 hepatitis C victims who received tainted blood before or after the 86/90 window could bankrupt medicare.

6 There is more than enough money in the 86/90 fund to include all hepatitis C victims who received tainted blood, including those in the pre-86/post-90 excluded group. Current data shows that: In the four and a half years that the 86/90 program has been in operation a total of 8,968 claims for compensation have been approved. This includes infected persons as well as family members of infected persons, so the actual number of infected persons is lower than 8,968, probably more like 5,000. Of the $1.2 billion originally committed to the 86/90 program, only about $371 million has been paid out to claimants. Last year, the federal government s Hepatitis C Compensation Fund earned $56 million more in income than it spent on claims and expenses. The fund recently released its annual report which shows that it ended the fiscal year with more than $1.1 billion still in the fund. There are approximately 6,000 persons in the pre-86/post-90 excluded group who contracted hepatitis C through tainted blood transfusions outside the 86/90 compensation window. The cost of including pre-86/post-90 hepatitis C victims is estimated at a maximum of $440 million. This amount is likely high because a larger percentage of these victims will be deceased or have a lower life expectancy and therefore lower costs. Recommendation The federal government of Canada should immediately expand access to the existing 86/90 fund to include hepatitis C victims now in the pre-86/post-90 excluded group. This compassionate action would provide relatively quick access to desperately needed financial assistance for thousands of victims across Canada.